I'm not sure if you will reply to this since I am a bit late, but my doctor thinks that I have MALS, but when you had MALS did you have bad intestinal pain along with stomach pain or just plain stomach pain? Because I have both, yet the stomach pain could be caused by MALS. My doctor wasn't sure if the intestinal pain was related, they didn't really specify.
Hi Kyra! I am more than happy to reply to your comment. I did have some intestinal pain, but I also had some other GI things going on like undiagnosed Celiac Disease and SIBO. Here is my video on SIBO ruclips.net/video/R0cqQykIOnA/видео.html (I don't have one for Celiac disease, yet). SIBO can cause intestional pain, but it could also have been just from the MALS. SIBO is also relatively easy to treat (just oral antibiotics). If it were me, I would treat the MALS first (once you get a confirmed diagnosis) and see if the intestinal pain resolves and if not, then continue to look for a cause for them. I hope that helps and makes sense! Let me know if you have any other questions! Many Hugs 💜 Alyssa
Alyssa Layne Okay thank you so much! I did a SIBO breath test and luckily it came back negative but they did find I had candida overgrowth so we are working on addressing that!
I am so glad to hear that! SIBO can sometimes be really stubborn. MALS can also cause some intestinal pain just depending on how severe the compression is and if other arteries are impacted as well. So that may still be your answer! I hope you get lots of relief soon! 💜 Alyssa
I’m almost 16 years old. I was rushed to the ER and had my gallbladder taken out a few months ago and while I was in the hospital waiting for surgery, they ran a scan and discovered proof of MALS. A month and a half after the gallbladder removal, the pain under right where the wire from the two cups of my bra met wasn’t away. Mid-upper stomach. In fact it was more severe especially after I ate. We pursued the path of treatment for MALS which means a whole bunch of tests and scans before a “proper diagnosis” is given. We met with the specialist and she still required more tests and I’m being tested for POTS in a few days. The specialist gave us a list of tests to complete and it’s frustrating that more information is still needed before someone can help me. I’m freaking out quite honestly. This video is 4 years old yet I’m so thankful for it existing because everyone I’ve talked to about it think it’s just a normal stomachache. It’s not. And I know there are people in this comments section and out there in this world that understand that. I’m overwhelmed, but all the same I feel blessed because I know there are cases out there where people suffer for months or even years before they get a proper diagnosis. Thank you for giving me hope and a place to share!
It’s heartbreaking that so many people have gone so long being misdiagnosed when MALS is their true diagnosis. Thank you for getting this information out!
I'm 45 years old, and have delt with the symptoms pretty much my entire life. I had my ultrasound last week, and they have rushed my CT angiogram in for today. I hope this gives me relief in any way.
Just found out I had this, I’ve been misdiagnosed with several other illnesses and diseases for 6 months now. I’m so glad I’ve finally got an answer but I’m really scared of getting surgery.
I am so glad you have found your answer! The road to diagnosis can certainly be a long one. Surgery can be really daunting, but life 2.0 after surgery is amazing. It takes a while to recover depending on your specific surgery, but in my opinion, it is worth every second of it! I hope you get relief soon, and let me know if you have any more questions!! Hugs 💜 Alyssa
I love how you presented it I have Ed’s, NCS already failed LRVT , MALS that Caused gastroparisis ( One great thing that you could add to this is they do encourage you to do a gastroparesis to study which is typically known as a gastric emptying study as a further evaluation on whether or not you are experiencing Mals issues.
Getting abdominal aorta decompression, celiac plexus ablation and abdominal aorta to celiac and gastric artery bypass surgery was scary for me when I learned the open surgery I needed killed 1 in 3 patients who get it, but it was worth it considering MALS is fatal without surgery. MALS // Dunbar Syndrome was really hard to diagnose this ungodly painful condition that caused nonstop vomiting, but having a pain management expert who believed me saved my life.
My Bariatric surgeon here in Los Angeles does a minimally invasive robotically assisted MALS procedure. Lap surgery may not be the only option anymore.
Thank you for the video. Itsvery well explained. Im so glad your better ^^ im actually studying for my boards exam and youve helped me to understand and help diagnose mals.
YAY! Good luck on your boards. I am a premed student, and it makes me so happy that other up and coming providers are learning more about the condition. Thank you so much for watching and for commenting! 💜 Alyssa
Hi there Alyssa, my name is Robin. I am a 46 year old mom of 2 littles. As I was watching your videos I knew that I needed to talk to you. My story started a few years back, about 5, to be exact. I was diagnosed with fibromyalgia . It's a musculoskeletal condition that causes widespread chronic pain. It also causes nerve pain. I am on several different medications for this condition, some including those for widespread nerve pain. My GP also has me on oxycodone for chronic pain. Around late September I started having more troubling issues. Every time I would eat I would have the worse upper GI pain. Got to the point that the only thing I could consume was cranberry juice. From late November up until about a week ago I lost 50+ pounds. I have had so many test done. CT scans, both upper and lower light work done and lastly a barium swallow test. The barium swallow test did however show that I have "Esophageal mobility disorder". My husband and I saw a episode of Grey's anatomy online and it happened to be the one of the young lady that had MALS. My husband wanted me to ask my GP about it at my last appointment but I felt so scared to bring up some other illness once again. The fibromyalgia was so hard to finally diagnose and , like I tell my husband and my family I feel like noone is going to believe me anymore. I'm sick and tired of being sick and tired. I also have a extremely screwed up thyroid system. I'm at the moment being tested for ashimottos. It's just one thing after another. I often feel like my own family is finding it hard to believe anything I say anymore. The pain is just below my breath bone and above my belly button. With my throat when I eat it often feels as if the food or even liquid is stuck in my throat like a huge lump. Even at night laying on my back I struggle to breathe. Am I going crazy? Do you think that I display any MALS symptoms? I mentioned it to my GP this week and he has NEVER heard of MALS. Because of my esophagus he's going to going to contact a GI doctor this coming week and ask him if he's heard of MALS. I'm afraid that if he hasn't this is about as far as I'm gonna get with any of this. You see, I live in Newfoundland, Canada and I have yet to hear of any doctors who know much of anything about the condition in this province. I have also heard that there aren't many in Toronto that work with MALS patients. I'm am so lost and so tired. Any help , weather it be contacts , specialists or even some medical information I could bring to my GP and other specialists that I may need to see. Anything can help. Thank you so much for listening to me. Thank you. Robin Drew of Newfoundland, Canada. 😊
Hi, too happy to see ur video. I am having same pain since, 10 yrs but, it is bit controllable with my routine life. There are no major symptoms like, vomiting, diaphragm pain except minor pain. Few days back, i was COVID positive due to this, i felt acute pain in my lower abdomen just lower to appendix nd its right side. However, my appendix has already been operated since, 10 yrs. I got my ultra sound followed by two CT scans in which it is diagnosed that, supply of artery or nerve is compressed. Now i am corona negative and pain is controllable. Can you suggest me, what should i do either to operate it or to let it be cure with concerned medicines if possible, plz Will appreciate you sympathetic reply ? God Bless you and Thank you.
Please talk about this more in a new video I’m having a hard time with my celiac artery. It hurts. I think I have a blood flow problem and compression of the nerves.
Hi Forever God Sent! I am hoping to get back on the RUclips bus very soon (I've had a rough patch lately) and my first planned video back with be about MALS. I am so sorry to hear that you are in pain, and hopefully you can get some relief soon! 💜 Alyssa
I had my 1st surgery at Children's National (I was still a pediatric case at the time) and I had my 2nd surgery at St. Johns hospital in CA, but there are others around the country who do the surgery. I know some of the Facebook groups (I'm in one called MALS PALS) keep lists of all the surgeons who are currently doing the release procedure. I hope this helps and I hope you have a speedy path to treatment and a speedy recovery! 💜 Alyssa
Did you get the surgery? Did it work? A CT scan showed 50-60% stenosis of MY celiac artery, but I haven't been able to find out why just yet--if it's compression by the MAL, or maybe plaque (I'm 60 yrs old). More testing in my future, but a lot of digestive sluggishness, some nausea, occasional pain--but pain is not the biggest thing. With only 50% of the blood getting to my liver, gall bladder, duodenum, spleen, and pancreas--that's gotta affect my digestion, right? It's S-L-O-W, and seems inefficient. Food rests in there for a long time, and I don't even eat that often (I do intermittent fasting).
Das klingt nach meinen Beschwerden , ich hatte eine 4D Ultraschalluntersuchung bei Professor Scholbach in Leipzig, man findet auf seiner Seite mein Krankheitsbild : Zwerchfellkompression , bei mir ist hauptsächlich die Leber betroffen ganz selten daher schwierig Ärzte zu finden LG Katrin
Hi there, I’ve been diagnosed with nutcracker syndrome, another compression disorder, but my pain sounds exactly like what would be conclusive with MALS. Everyone has told me my upper stomach pain and burning sensation couldn’t be from NCS. I had an endoscopy done to rule out gastritis or ulcers and my stomach looked fine. But I have horrible pain every single day, mostly in my upper stomach. And it swells up when the pain is present. The pressure is so much I also get chest pain everyday that feels like a heart attack which makes it hurt to breathe. My CT with contrast only showed nutcracker but I’m wondering if there’s a chance they could have missed MALS since my symptoms aren’t typical with NCS. My vascular doc wants me to get surgery for it but I’m hesitant because I feel like there’s more going on then we all realize. Sorry for the long comment, I’m just kind of desperate at this point!
Hallo ma'am.i am from India. My sister suffer this condition Celia artery compration syndrome. Her age is 23. 2 year are passing in this condition. Firstly doing meditation.but no relief then leproscopy surgery perform.but no proper relief. Only one sign in patient is pain during eating aur drinking anything. One thing special is more pain when she eat any sweat diet of food . Please ma'am suggest to me.what I am next do....
You are so welcome! I hope it helped explain the details of what they are looking for. I am also glad to hear it is being considered as a potential diagnosis. I wish you the best of luck in finding your answer and getting relief from your symptoms. Thanks for watching and for commenting! - 💜 Alyssa Layne
Yay! I am so glad to hear you are getting answers! I am sure the block will be next on the list, enjoy it!. I wanted breakfast food after mine, and pancakes have never been so delicious! - 💜 Alyssa
My gastroenterologist ordered the ct scan. I was just diagnosed with MALS. They rushed to get my appointment with a vascular surgeon in a couple days. 🤯😳 The stomach pain is right where the bra band is in front. It’s awful. It seems as though only thin people have it, yet I’m 15 lbs overweight.
I am glad that you were taken seriously and that your medical team is working on a fast timeline! I think the idea that only thin people have MALS comes from the rapid weight loss that it can cause, but those who have been living with it for a long while have to learn to compensate and continue to eat. Even after some of my dramatic weight loss with MALS, I did not classify as "underweight" since I started out with plenty to lose, and I eventually learned how to pick eating even though I knew how much pain it would cause me because starving was no longer a viable option. I hope you find full relief soon from all your symptoms! Thanks for stopping by and sharing! - 💜 Alyssa
@@AlyssaLayne One thing I don’t understand is how doctors do not prescribe pain killers anymore. With their education, they know when someone is in actual pain. The CT Scan and angiogram prove there’s a bad issue. Tentatively, I’m getting surgery about 3 weeks from now. Thank God. I’m so desperate I’m putting arthritis cream on in addition to Tylenol and a hot water bottle. This is terrible. Thank you for listening and sharing so much. I always come back to you!
@tbunnyshy, I am sure many doctors are concerned about the ongoing opioid crisis, and I'm not sure there is a good understanding of just how debilitating MALS pain can be since there is such a range of experiences with MALS. Regardless, I was thankful when I found a doctor who was willing to help me treat my pain while I was waiting for my surgery date. I am so glad to hear that you are getting a surgery date; I can't wait to hear how life 2.0 is for you! Be sure to keep us up to date with how you are doing! - 💜 Alyssa
Hi yanaa, I am so glad to hear of people who do not present with rapid weight loss being diagnosed and receiving treatment! I have heard that can be a tremendous struggle. Thank you so much for sharing that; I know it will bring hope to others who are in the same situation. I hope you get to feeling better and get to enjoy life 2.0! - 💜 Alyssa
Hi, after lots of test done, they found i am suffering with celiac artery disease. So only way to surgery to relief this disease. But the doctor said 50% patients fully relief from this disease after surgery and 50% patients got this back after couple years. I am so confused.
What are your symptoms, and how elevated were your velocities via US? Was the SMA and Celiac both showing stenosis? I had surgery 9 years ago with 2 cardiovascular surgeons. They utilized a laporscopic procedure. I had an improvement, although I am currently going through another evaluation. My 1st stop was the US. The next step will most likely be done via an angiogram. Best of luck to you.
I’m not 100% sure if I have it but I am getting checked soon to see 🥺 I had a CT scan yesterday show that I might have it and it’s really scary to hear this. I’m not use to surgeries and never really had one so I’m freaking out. I also worry that it might cause more problems in the future or if the surgery didn’t fix it fully..idk it’s been a cray year after already been told I have celiac...
Have you had further follow ups yet? I totally get the fear, and it is 100% reasonable. Those are valid concerns, but from what I've seen in the community, MALS doesn't cause further issues (though sometimes the surgeries fail and more are needed). It just often presents with a bunch of other illnesses. I was also diagnosed with celiac disease in between 2 of my MALS surgeries. The good news is that we live in a time where doctors know what MALS is and are trying to treat it. Hopefully you will have answers soon and will be on your way to feeling better. Thanks for watching and for sharing!! 💜 - Alyssa
@@AlyssaLayne I only found out at the ER but I’ll soon be doing further testing soon 😊 I really do hope that surgery will really treat it so I can continue to enjoy my life without the pain. I know I still have issues with celiac since they told me it’ll take a year or 2 to fully heal but just can’t wait to get to that point
You for sure will get to that point! And it is amazing that they caught it on a scan in the ER. I have gotten relief from surgery, and life 2.0 is great. The celiac can take some managing, but once you get used to it, its not that bad. Stay in touch and let me know if you have any questions or if there is anything I can do to help! 💜 - Alyssa
I never had a pain increase with inhaling versus exhaling, but the compression of the nerve and the celiac artery do change and worsen when exhaling. Hence, it is possible that someone might experience more pain with exhaling. I also found that my pain was localized to my abdomen, and I never felt it in my back. Still, there is a wide variety of MALS experiences out there, so it's possible for the pain to be in the upper back, but I haven't yet met anyone with that experience. Thanks for the questions! - 💜 Alyssa
My daughter has been suffering with abdominal pain for 7-8 months. Her pain has always been at the stomach area between the ribs and is very painful to the touch around the diaphragm. She has had all gastric tests with normal results. She recently had a celiac plexus block, and it was totally successful for about 11 hours, then by 24 hours, the pain was back to full strength. I have a question. Did you ever have problems with very painful hiccups, especially after eating? I am praying that we can get a diagnosis and help.
I am so sorry to hear that your daughter has been suffering with such pain. To answer your question, I've had quite an interesting history with hiccups (including having them frequently my whole life and for hours at a time when I was still in the womb), but when my MALS was bad my hiccups would be especially painful and I would do an number of tricks (like holding by breath) to get them to stop. I am also praying that you can get answers and relief for your daughter. Keep up the good fight; I know she greatly appreciates it. 💜 - Alyssa
Absolutely! Fatigue can be and is a big part of MALS. It was often hard for me to place because it is also a symptom of several of my other chronic illnesses. But the constant pain alone can cause fatigue, as can the fact that people are often not getting good nutrition when suffering from MALS. I hope this helps. Let me know if you have other questions! 💜
Alyssa Layne thank you so much. My son is getting investigated for this after so much suffering.. he sleeps about 14hrs a day and the pain stops him from attending year 10 at school .
@@talktechmom5494 I am so sorry to hear that, but I am glad to know that his Drs. are investigating MALS. It is so uncommon that it often is not ever considered by many Drs. Has he ever been tested for/diagnosed with POTS? It could be compounding the fatigue; when I was first diagnosed with POTS, I was 14 years old and sleeping 18 hrs a day. It might be something to consider along with MALS. I pray that you get answers and relief soon, and tell him to take heart because life 2.0 (or even 3.0) after surgery is possible and it is wonderful!
well I was trying to find some information on multi-angle light scattering, but youtube led me here. IDK I just found you so pretty and wanna type something lol 💖
I have a terrible burning gnawing sensation dead center in my solar plexus along with severe digestive distress. Could this be the cause?? Its the closest thing i can find
Hi Austin, I am not a doctor, but MALS could certainly be a possible diagnosis that you might want to bring up with your doctor and look into. I wish you the best and hope you are feeling better now! - 💜 Alyssa
Hi. I just had a cta with contrast to check arteries due to cyanosis in feet past 4 yrs undiagnosed and report says...severe narrowing celiac region median acruate ligament. Mals??
I did not have much in the way of swelling at all, but my abdomen was sensitive to touch directly on the midline underneath my breastbone. I hope that helps! - 💜 Alyssa
Hi! So I’m layla and I’m 15. Loved this video very helpful. So I have MALS anatomy and exact symptoms but compression isn’t visible on the Celiac artery but when I eat and do a duplex it gets compressed. I’m now thinking i might have the nerve type rather than the artery type or cause. What tests can they do? Or how do I make sure?
Hi Layla, I am sorry to hear you are having symptoms but struggling to get a diagnosis. I am not sure there is a consensus about how to diagnose the nerve type. My best guess is they would go for a nerve block and see if your symptoms improve with that. If so, you might be a good candidate for surgery to address those nerves. I hope you are doing better now! - 💜Alyssa
Do you feel this affecting your diaphragm or ability to take a deep breath? I'm a Covid long hauler that still has difficulty breathing, but it feels like sometimes I can get the deep breath and other times it kind of sticks at the solar plexus point on the left side and something doesn't expand properly there which then in turn doesn't allow the left chest to expand fully and the left throat. Diaphragm isn't obviously paralyzed, but it's the main cause of my difficulty breathing. I also get a kind of bubble swelling around that diaphragm area as the day wears on, but it feels muscular, so I suspect maybe something to do with either the ligaments or the muscles...
Hi Serena, I was never able to feel MALS in my diaphragm, and I think I would have as even before my first surgery I was studying oboe (a wind instrument) in college. This is not to say that what you are experiencing couldn't be MALS, but I did not experience anything like that myself. You might pose this question to one of the MALS Facebook groups and see if there is anyone there with a similar experience. I hope you get to breathing easier and feeling better soon! - 💜 Alyssa
Hi I'm just wondering how are you since you made this video? Also when I had my ct scan they told me to hold my breath rather than breath out? Wonder could this be a problem diagnosing MALS
I am doing okay, life has been pretty crazy this year and I don't think it's going to let up anytime soon, but my health has been pretty stable the last several months. Hopefully, when things settle down, I will be able to make a proper update video. Thank you so much for asking! To answer your other question, it could be a problem and weaken the diagnostic power of the CT. I would wait and see what the radiologist report says, and if it's negative for MALS, you might talk to your provider about the breathing and see if they think it warrants a new test. I am sorry you are having to deal with people not being familiar with the conditions or the protocols for the diagnostic testing. I hope you will have answers and relief soon! 💜- Alyssa
They do the nerve block and inject an anesthetic agent into the celiac plexus. I can't find what kind they use for sure, but lidocaine sticks out in my brain for some reason. If you get to that point, I am sure the doctor who performs the procedure (in my case it was a pain specialist) can tell you exactly what they will use. -Hugs 💜 Alyssa
I had surgery in November. I’m still having symptoms. Nausea, vomiting and pain. Does surgery work for everyone? Doctors said, wait 6 months to see if surgery worked. I just can’t take this anymore it’s already been a year living like this.
Hi Lety, I am so sorry to hear you are still having symptoms. I know that there is a range of responses that people have to surgery, and in my experience, it took me a while to be sure the surgery worked and to see a significant improvement in my health (around 6-8 months and then a year before I felt fully recovered). I also know many people (including myself) require more than 1 surgery. Keep your head up and keep bringing up your concerns with your doctor. Things can still get better. I know how frustrating it can be to have long-lasting health issues, but there is still hope that things will improve. I hope you find relief from your symptoms very soon! - 💜 Alyssa
It took me about 4 months to feel fully recovered from the surgery and the abdominal pain, though I continue to have some other lingering GI issues even now at 7 months post-op.
I felt fully recovered from the MALS pain and back to a good working baseline after about 4 months, though I do have some lingering GI problems now at 7 months post OP, it is also hard to know what those problems are caused by since my health is so complicated! Thank you for watching and asking the question!!
i was hospitalized for a week including 3 days in the critical care unit. it took me easily a year for fully open aorta to celiac artery and gastric artery bypass surgery as i had over 90% of the celiac trunk blocked by the ligament. finding a surgeon who knows how to do this surgery is almost impossible as this is a really rarely performed surgery. i had surgery done by the doctor who had performed the most surgeries in north america and was his 33rd case in an over 50 year career. i was told beforehand that the surgery killed a third of the people who made it to the operating room, but that without surgery, MALS was a terminal illness. unfortunately i had sufferred what was described as gruesome, bloody, and catastrophic damage during what the doctor described as his very worst case. the bottom line is that i have survived at least 13 years later and am grateful.
Hi ooo mmm, thank you so much for sharing your incredible story! I am happy you are still going strong despite having such a severe case. I know there are others in this community who are glad to hear of someone who is seeing long-term relief and for sharing that recovery experiences can vary greatly and depend on many different factors. Thank you again! - 💜 Alyssa
Did you have pain in your right upper and back by your kidney and in the front the right side buy your rib cage in front of where your gallbladder would be and what really triggered your symptoms food wise very informative also are you born with this or can it be from a accident thank very much
Thank you so much for the questions! I did not have pain in my back or on the right side in the front. It just so happens that I also had my gallbladder out as well ( ruclips.net/video/GCyLDAFd7JY/видео.html ) and anecdotally, gallbladder issues seem pretty common in MALS patients. For me anything thicker than water would trigger pain for me, even the nutrient shakes I was using. The theory is that this is something one is born with, but it is not uncommon for it to be asymptomatic until some point in adulthood. There is definitely a need for more research on that front. Thank you so much for watching! 💜 - Alyssa
Hey thanks for the information I have been diagnosed with MALS in 2018 I have all symptoms like vomiting loss of appetite even if I drink water I just vomit I have pain in my upper abdominal but I am not losing weight so plz help me with this n I have pcod history I have operated in 2016 there was a 8cm cyst n now also m having pcod can u plz help me coz iam tired of being sick 😫 I want to become healthy plz help that will be grateful I am having MALS but not losing weight coz of pocd???
Hi Thesupersneha! As I mentioned, weight loss is not a requirement for MALS. I would suggest asking your doctor about MALS specifically and if they would please do the testing to rule it in or out. I find that asking for a test directly can help move the process along, especially if you think you have an atypical presentation. I am wishing you the best of luck on getting answers and feeling better soon! - 💜Alyssa
U explained it better than me , I gotta remake my video that’s why it’s private , I had my surgery last month , I’m having a few complications , I went with Dr Hsu ❤️ he’s very very well known and one of the best ❤️thank you for your informative video ❤️
Thank you for watching! I'm so sorry to hear you are having complications. I had my first surgery with Dr. Kane in 2017 and I had my second surgery in May of this year with Dr. Bilchik. I am planning on making more of a storytime video in the future that will cover my personal experiences in detail. Let me know when you redo your video, I would love to watch it! Much love 💜
This is an excellent question! My understanding is that anyone can be walking around with the compression without knowing and that it in and of itself is quite common. Additionally, I don't know any stats, but it seems to me that most people present with pain, but I seem to recall in the MALS PALS Facebook group some people presented with just nausea. I think for a compression to be called MALS, there also has to be some sign of disruption to the system which is usually pain. In short, I think the answer is yes, but I'm not 100% sure. I hope that helps! Also, thanks for the comment 💜 - Alyssa
i cant tell if i could possibly have mals or if it really is just ibs, i have a lot of pain and bloating and nausea after eating right under my ribs in the center or my stomach and sometimes random pain on the right side of my chest, ive had a ct with contrast an endoscopy a capsule endoscopy and a colonoscopy and all are normal! my doctor didnt even mention mals at all and i fee like the freak who looks up rare illnesses on the internet if i bring it up, im only 17 and ive been sick since feb now i just wanna know if im crazy or not😭
Hi Neha! I understand how you feel! It can be hard to know if you are making a mountain out of a molehill or if there is something wrong. For me, my pain was so debilitating that I knew it had to be something, and my pain was clearly not IBS. Many doctors do not even know about MALS, so it could be good to bring it up with them if you think it might be a possibility. It may also be worth it to visit a doctor who knows about MALS already. There is a list of those doctors on the MALS PALS Facebook page. My best advice is know you are not alone and do your best to advocate for yourself because no one knows what is going on in your body better than you. Best of luck! - 💜 Alyssa
When it was bad and I pushed just under my sternum, I could feel the huge palpitations in my fingertips and hear them with a stethoscope. I have a bump from my surgical scar there now. 💜 Does that answer your question?
@@AlyssaLayne yes I suppose so, however for me, I've always been able to actually feel a bump in my abdomen. I've gone through a lot in terms of checking for GI issues and everything has been clean. The only diagnosis rn is severe IBS-C, but I've always had a feeling it was something more. I'm a young adult male as well so idk what to think anymore but I'm gonna ask to get this checked. This has affected my life for a long time.
This is certainly something to look into. It isn't often on the initial differential for GI pain. And just because it wasn't a part of my experience does not mean it couldn't be a part of yours! I hope you get both answers and relief soon!!
I don't mind at all! They were infrequent and slow, but I was not eating every day, and slow motility is common in EDS patients. I would have a BM every 3-4 days.
I am so sorry to hear that you haven't been able to find answers in the tests. This is not my area of expertise, but I know some in the community believe that MALS is a nerve issue more than it is a compression issue and that no compression of the artery is needed for symptoms to occur. This makes testing for it difficult because two of the standard tests (the CTA and the doppler ultrasound) are testing primarily for the compression of the celiac artery and not the nerves. I don't really know more than that, but the MALS PALS Facebook group might be a good place to find others who've had experience with doctors who are willing to look for and at nerve-only MALS. Best of luck! - 💜 Alyssa
I'm not 100% sure what you mean by a hard heat beat. I could often feel my heat beat in my abdomen (palpitations). I would also be able to tell that my heart was working hard, but this is also a symptom of some of my other conditions (like POTS), so it is difficult for me to tell if it was from MALS or something else. I hope this answers your question. Thanks for watching and for commenting! 💜 - Alyssa
I’m thinking it could be palpitations and some severe case of compression causing pots. Thank you tho. I have been having a lot of issues since my hernia is pressing on my ligaments. A lot of trouble with passing out. Palpitations. Weakness and I can feel the poor blood flow in my chest and racing of the heart like it’s over working. Very scary.
I wasn't really. When I met my surgeon, he was very reassuring, and I had a lot of confidence in him and his ability to perform the surgery. I also knew that there wasn't much of an option to having surgery - there was no way I could go on living my life in the kind of pain that I was in. It also helped that I had my first surgery when I was a kid, and it went well. While there were some nerves day of, I knew that having surgery was going to improve my quality of life, and I was excited to finally feel better! Hugs 💜 Alyssa
My doctor ordered me a ultrasound for MALS diagnosis but I thought it was through CT scan ☹️ she doesn’t know much about it so I hope she didn’t order me the wrong test
HI Briee, They can both be tests for MALS, and most doctors prefer to start with the less invasive doppler ultrasound to evaluate your celiac artery for compression. If you are concerned, it never hurts to double-check the plan with your doctor to make sure you are both on the same page. I wish you luck on your journey to feeling better! - 💜 Alyssa
It should absolutely be CT with contrast that’s how I diagnosed with my multiple vascular compressions.. MALS in addition they may suggest a gastric empty study for the evaluation of gastroparesis I just finished my gastroparesis test few days ago. I know this was months ago but I do hope that you found some answers
They did my ultrasound & said they don’t see compression , but I have EVERY symptom. Could Doppler be wrong ? I wish they did a ct also ☹️ did yours come out positive once they did a ultrasound ? Or did u need further testing
Hi Briee, I'm so sorry to hear that you haven't found the answers you are looking for yet. My doppler indicated my MALS. It still required further testing, but that was only pursued after the positive indication from the doppler. There is a theory that the MALS symptoms could be only due to an involvement of the celiac ganglion (nerves) and not the artery, and the Doppler only tests for a compression of the artery. However, this is not a widely held belief, and it could be hard to get your doctor on board with this train of thought, but it might be something to look into. There are people with far more experience with neurogenic MALS on the MALS PALS Facebook group, and that might be a place to find more information on looking into this. I hope you find answers soon! - 💜 Alyssa
What questions do you still have about MALS (Celiac Artery Compression Syndrome)? I am more than happy to do my best to answer!
I'm not sure if you will reply to this since I am a bit late, but my doctor thinks that I have MALS, but when you had MALS did you have bad intestinal pain along with stomach pain or just plain stomach pain? Because I have both, yet the stomach pain could be caused by MALS. My doctor wasn't sure if the intestinal pain was related, they didn't really specify.
Hi Kyra! I am more than happy to reply to your comment. I did have some intestinal pain, but I also had some other GI things going on like undiagnosed Celiac Disease and SIBO. Here is my video on SIBO ruclips.net/video/R0cqQykIOnA/видео.html (I don't have one for Celiac disease, yet). SIBO can cause intestional pain, but it could also have been just from the MALS. SIBO is also relatively easy to treat (just oral antibiotics). If it were me, I would treat the MALS first (once you get a confirmed diagnosis) and see if the intestinal pain resolves and if not, then continue to look for a cause for them. I hope that helps and makes sense! Let me know if you have any other questions! Many Hugs 💜 Alyssa
Alyssa Layne Okay thank you so much! I did a SIBO breath test and luckily it came back negative but they did find I had candida overgrowth so we are working on addressing that!
I am so glad to hear that! SIBO can sometimes be really stubborn. MALS can also cause some intestinal pain just depending on how severe the compression is and if other arteries are impacted as well. So that may still be your answer! I hope you get lots of relief soon! 💜 Alyssa
So u feel shortness of breath or like something is pressing up against ur lung ir chest
I’m almost 16 years old. I was rushed to the ER and had my gallbladder taken out a few months ago and while I was in the hospital waiting for surgery, they ran a scan and discovered proof of MALS.
A month and a half after the gallbladder removal, the pain under right where the wire from the two cups of my bra met wasn’t away. Mid-upper stomach. In fact it was more severe especially after I ate. We pursued the path of treatment for MALS which means a whole bunch of tests and scans before a “proper diagnosis” is given.
We met with the specialist and she still required more tests and I’m being tested for POTS in a few days. The specialist gave us a list of tests to complete and it’s frustrating that more information is still needed before someone can help me.
I’m freaking out quite honestly. This video is 4 years old yet I’m so thankful for it existing because everyone I’ve talked to about it think it’s just a normal stomachache.
It’s not.
And I know there are people in this comments section and out there in this world that understand that.
I’m overwhelmed, but all the same I feel blessed because I know there are cases out there where people suffer for months or even years before they get a proper diagnosis.
Thank you for giving me hope and a place to share!
It’s heartbreaking that so many people have gone so long being misdiagnosed when MALS is their true diagnosis. Thank you for getting this information out!
Information is everything!
I'm 45 years old, and have delt with the symptoms pretty much my entire life. I had my ultrasound last week, and they have rushed my CT angiogram in for today. I hope this gives me relief in any way.
Just found out I had this, I’ve been misdiagnosed with several other illnesses and diseases for 6 months now. I’m so glad I’ve finally got an answer but I’m really scared of getting surgery.
I am so glad you have found your answer! The road to diagnosis can certainly be a long one. Surgery can be really daunting, but life 2.0 after surgery is amazing. It takes a while to recover depending on your specific surgery, but in my opinion, it is worth every second of it! I hope you get relief soon, and let me know if you have any more questions!! Hugs 💜 Alyssa
What were your symptoms??
I love how you presented it I have Ed’s, NCS already failed LRVT , MALS that Caused gastroparisis ( One great thing that you could add to this is they do encourage you to do a gastroparesis to study which is typically known as a gastric emptying study as a further evaluation on whether or not you are experiencing Mals issues.
Getting abdominal aorta decompression, celiac plexus ablation and abdominal aorta to celiac and gastric artery bypass surgery was scary for me when I learned the open surgery I needed killed 1 in 3 patients who get it, but it was worth it considering MALS is fatal without surgery. MALS // Dunbar Syndrome was really hard to diagnose this ungodly painful condition that caused nonstop vomiting, but having a pain management expert who believed me saved my life.
I was just diagnosed a couple of days ago after a trip to the ER. This video helped me a lot!
I am so glad it was helpful! - 💜 Alyssa
My Bariatric surgeon here in Los Angeles does a minimally invasive robotically assisted MALS procedure. Lap surgery may not be the only option anymore.
Thank you for the video. Itsvery well explained. Im so glad your better ^^ im actually studying for my boards exam and youve helped me to understand and help diagnose mals.
YAY! Good luck on your boards. I am a premed student, and it makes me so happy that other up and coming providers are learning more about the condition. Thank you so much for watching and for commenting! 💜 Alyssa
Hi there Alyssa, my name is Robin. I am a 46 year old mom of 2 littles. As I was watching your videos I knew that I needed to talk to you. My story started a few years back, about 5, to be exact. I was diagnosed with fibromyalgia . It's a musculoskeletal condition that causes widespread chronic pain. It also causes nerve pain. I am on several different medications for this condition, some including those for widespread nerve pain. My GP also has me on oxycodone for chronic pain. Around late September I started having more troubling issues. Every time I would eat I would have the worse upper GI pain. Got to the point that the only thing I could consume was cranberry juice. From late November up until about a week ago I lost 50+ pounds. I have had so many test done. CT scans, both upper and lower light work done and lastly a barium swallow test. The barium swallow test did however show that I have "Esophageal mobility disorder". My husband and I saw a episode of Grey's anatomy online and it happened to be the one of the young lady that had MALS. My husband wanted me to ask my GP about it at my last appointment but I felt so scared to bring up some other illness once again. The fibromyalgia was so hard to finally diagnose and , like I tell my husband and my family I feel like noone is going to believe me anymore. I'm sick and tired of being sick and tired. I also have a extremely screwed up thyroid system. I'm at the moment being tested for ashimottos. It's just one thing after another. I often feel like my own family is finding it hard to believe anything I say anymore. The pain is just below my breath bone and above my belly button. With my throat when I eat it often feels as if the food or even liquid is stuck in my throat like a huge lump. Even at night laying on my back I struggle to breathe. Am I going crazy? Do you think that I display any MALS symptoms? I mentioned it to my GP this week and he has NEVER heard of MALS. Because of my esophagus he's going to going to contact a GI doctor this coming week and ask him if he's heard of MALS. I'm afraid that if he hasn't this is about as far as I'm gonna get with any of this. You see, I live in Newfoundland, Canada and I have yet to hear of any doctors who know much of anything about the condition in this province. I have also heard that there aren't many in Toronto that work with MALS patients. I'm am so lost and so tired. Any help , weather it be contacts , specialists or even some medical information I could bring to my GP and other specialists that I may need to see. Anything can help. Thank you so much for listening to me. Thank you. Robin Drew of Newfoundland, Canada. 😊
Hi, too happy to see ur video. I am having same pain since, 10 yrs but, it is bit controllable with my routine life. There are no major symptoms like, vomiting, diaphragm pain except minor pain. Few days back, i was COVID positive due to this, i felt acute pain in my lower abdomen just lower to appendix nd its right side. However, my appendix has already been operated since, 10 yrs.
I got my ultra sound followed by two CT scans in which it is diagnosed that, supply of artery or nerve is compressed.
Now i am corona negative and pain is controllable.
Can you suggest me, what should i do either to operate it or to let it be cure with concerned medicines if possible, plz
Will appreciate you sympathetic reply ?
God Bless you and Thank you.
Please talk about this more in a new video I’m having a hard time with my celiac artery. It hurts. I think I have a blood flow problem and compression of the nerves.
Hi Forever God Sent! I am hoping to get back on the RUclips bus very soon (I've had a rough patch lately) and my first planned video back with be about MALS. I am so sorry to hear that you are in pain, and hopefully you can get some relief soon! 💜 Alyssa
Alyssa Layne where did they do your surgery? I need medical attention soon.
I had my 1st surgery at Children's National (I was still a pediatric case at the time) and I had my 2nd surgery at St. Johns hospital in CA, but there are others around the country who do the surgery. I know some of the Facebook groups (I'm in one called MALS PALS) keep lists of all the surgeons who are currently doing the release procedure. I hope this helps and I hope you have a speedy path to treatment and a speedy recovery! 💜 Alyssa
I have MALS, too. I'm in the investigation process of where and who to do my surgery.
Hi Twyla, I hope you have been able to find a surgeon and are on the path to feeling better now! - 💜 Alyssa
Hello, did you find it? What's the situation now?
You explained it very well. 👍🏻
Thank you for watching it!! 💜
What was your first symtoms? Do you have a feeding tube? Do you eat by mouth? Sorry for so many questions.
Did you get the surgery? Did it work?
A CT scan showed 50-60% stenosis of MY celiac artery, but I haven't been able to find out why just yet--if it's compression by the MAL, or maybe plaque (I'm 60 yrs old). More testing in my future, but a lot of digestive sluggishness, some nausea, occasional pain--but pain is not the biggest thing. With only 50% of the blood getting to my liver, gall bladder, duodenum, spleen, and pancreas--that's gotta affect my digestion, right? It's S-L-O-W, and seems inefficient. Food rests in there for a long time, and I don't even eat that often (I do intermittent fasting).
Das klingt nach meinen Beschwerden , ich hatte eine 4D Ultraschalluntersuchung bei Professor Scholbach in Leipzig, man findet auf seiner Seite mein Krankheitsbild : Zwerchfellkompression , bei mir ist hauptsächlich die Leber betroffen ganz selten daher schwierig Ärzte zu finden LG Katrin
Hi there, I’ve been diagnosed with nutcracker syndrome, another compression disorder, but my pain sounds exactly like what would be conclusive with MALS. Everyone has told me my upper stomach pain and burning sensation couldn’t be from NCS. I had an endoscopy done to rule out gastritis or ulcers and my stomach looked fine. But I have horrible pain every single day, mostly in my upper stomach. And it swells up when the pain is present. The pressure is so much I also get chest pain everyday that feels like a heart attack which makes it hurt to breathe. My CT with contrast only showed nutcracker but I’m wondering if there’s a chance they could have missed MALS since my symptoms aren’t typical with NCS. My vascular doc wants me to get surgery for it but I’m hesitant because I feel like there’s more going on then we all realize. Sorry for the long comment, I’m just kind of desperate at this point!
Make another doctor appointment and try and get the imaging there redone as a second opinion. You might have to do go a different doctor altogether.
Hallo ma'am.i am from India.
My sister suffer this condition Celia artery compration syndrome. Her age is 23.
2 year are passing in this condition. Firstly doing meditation.but no relief then leproscopy surgery perform.but no proper relief.
Only one sign in patient is pain during eating aur drinking anything. One thing special is more pain when she eat any sweat diet of food .
Please ma'am suggest to me.what I am next do....
I might have this we're pursuing how possible this is for me and thank you for the great vid on what might be going on with me!
You are so welcome! I hope it helped explain the details of what they are looking for. I am also glad to hear it is being considered as a potential diagnosis. I wish you the best of luck in finding your answer and getting relief from your symptoms. Thanks for watching and for commenting! - 💜 Alyssa Layne
@@AlyssaLayne I got an official diagnosis of MALS, so now I bet the block will be something to consider next. phew.
Yay! I am so glad to hear you are getting answers! I am sure the block will be next on the list, enjoy it!. I wanted breakfast food after mine, and pancakes have never been so delicious! - 💜 Alyssa
My gastroenterologist ordered the ct scan. I was just diagnosed with MALS. They rushed to get my appointment with a vascular surgeon in a couple days. 🤯😳 The stomach pain is right where the bra band is in front. It’s awful. It seems as though only thin people have it, yet I’m 15 lbs overweight.
I am glad that you were taken seriously and that your medical team is working on a fast timeline! I think the idea that only thin people have MALS comes from the rapid weight loss that it can cause, but those who have been living with it for a long while have to learn to compensate and continue to eat. Even after some of my dramatic weight loss with MALS, I did not classify as "underweight" since I started out with plenty to lose, and I eventually learned how to pick eating even though I knew how much pain it would cause me because starving was no longer a viable option. I hope you find full relief soon from all your symptoms! Thanks for stopping by and sharing! - 💜 Alyssa
@@AlyssaLayne One thing I don’t understand is how doctors do not prescribe pain killers anymore. With their education, they know when someone is in actual pain. The CT Scan and angiogram prove there’s a bad issue. Tentatively, I’m getting surgery about 3 weeks from now. Thank God. I’m so desperate I’m putting arthritis cream on in addition to Tylenol and a hot water bottle. This is terrible. Thank you for listening and sharing so much. I always come back to you!
@tbunnyshy, I am sure many doctors are concerned about the ongoing opioid crisis, and I'm not sure there is a good understanding of just how debilitating MALS pain can be since there is such a range of experiences with MALS. Regardless, I was thankful when I found a doctor who was willing to help me treat my pain while I was waiting for my surgery date. I am so glad to hear that you are getting a surgery date; I can't wait to hear how life 2.0 is for you! Be sure to keep us up to date with how you are doing! - 💜 Alyssa
I have been diagnosed with MALS but I don’t have issues in losing weight and I am not thin .!
Hi yanaa, I am so glad to hear of people who do not present with rapid weight loss being diagnosed and receiving treatment! I have heard that can be a tremendous struggle. Thank you so much for sharing that; I know it will bring hope to others who are in the same situation. I hope you get to feeling better and get to enjoy life 2.0! - 💜 Alyssa
@@AlyssaLayne thank you dear😊
I just had a ct scan and they found MALS and I'm freaking out and need some one that's gone though it to talk to please help
Hi, after lots of test done, they found i am suffering with celiac artery disease. So only way to surgery to relief this disease. But the doctor said 50% patients fully relief from this disease after surgery and 50% patients got this back after couple years. I am so confused.
What are your symptoms, and how elevated were your velocities via US? Was the SMA and Celiac both showing stenosis? I had surgery 9 years ago with 2 cardiovascular surgeons. They utilized a laporscopic procedure. I had an improvement, although I am currently going through another evaluation. My 1st stop was the US. The next step will most likely be done via an angiogram. Best of luck to you.
I’m not 100% sure if I have it but I am getting checked soon to see 🥺 I had a CT scan yesterday show that I might have it and it’s really scary to hear this. I’m not use to surgeries and never really had one so I’m freaking out. I also worry that it might cause more problems in the future or if the surgery didn’t fix it fully..idk it’s been a cray year after already been told I have celiac...
Have you had further follow ups yet? I totally get the fear, and it is 100% reasonable. Those are valid concerns, but from what I've seen in the community, MALS doesn't cause further issues (though sometimes the surgeries fail and more are needed). It just often presents with a bunch of other illnesses. I was also diagnosed with celiac disease in between 2 of my MALS surgeries. The good news is that we live in a time where doctors know what MALS is and are trying to treat it. Hopefully you will have answers soon and will be on your way to feeling better. Thanks for watching and for sharing!! 💜 - Alyssa
@@AlyssaLayne I only found out at the ER but I’ll soon be doing further testing soon 😊 I really do hope that surgery will really treat it so I can continue to enjoy my life without the pain. I know I still have issues with celiac since they told me it’ll take a year or 2 to fully heal but just can’t wait to get to that point
You for sure will get to that point! And it is amazing that they caught it on a scan in the ER. I have gotten relief from surgery, and life 2.0 is great. The celiac can take some managing, but once you get used to it, its not that bad. Stay in touch and let me know if you have any questions or if there is anything I can do to help! 💜 - Alyssa
@@AlyssaLayne thank you so much I appreciate it and yes I will 😊
I cannot get proper or further testing in Canada for my daughter. I'm so lost.
I have a question does the pain increases after inhaling or exhailing and does the pain occurs in the upper obdomen or in the upper back of the body ?
I never had a pain increase with inhaling versus exhaling, but the compression of the nerve and the celiac artery do change and worsen when exhaling. Hence, it is possible that someone might experience more pain with exhaling. I also found that my pain was localized to my abdomen, and I never felt it in my back. Still, there is a wide variety of MALS experiences out there, so it's possible for the pain to be in the upper back, but I haven't yet met anyone with that experience. Thanks for the questions! - 💜 Alyssa
@@AlyssaLayne thank you very much
I have the symptoms of the severe back pain and trouble moving diaphragm area and I have mals
They said I don’t have Mals, what else could it be- does any drug or thc gummies give pain relief and relax the ligaments
My daughter has been suffering with abdominal pain for 7-8 months. Her pain has always been at the stomach area between the ribs and is very painful to the touch around the diaphragm. She has had all gastric tests with normal results. She recently had a celiac plexus block, and it was totally successful for about 11 hours, then by 24 hours, the pain was back to full strength. I have a question. Did you ever have problems with very painful hiccups, especially after eating? I am praying that we can get a diagnosis and help.
I am so sorry to hear that your daughter has been suffering with such pain. To answer your question, I've had quite an interesting history with hiccups (including having them frequently my whole life and for hours at a time when I was still in the womb), but when my MALS was bad my hiccups would be especially painful and I would do an number of tricks (like holding by breath) to get them to stop. I am also praying that you can get answers and relief for your daughter. Keep up the good fight; I know she greatly appreciates it. 💜 - Alyssa
Thank you so much. Can you tell me if fatigue is a symptom?
Absolutely! Fatigue can be and is a big part of MALS. It was often hard for me to place because it is also a symptom of several of my other chronic illnesses. But the constant pain alone can cause fatigue, as can the fact that people are often not getting good nutrition when suffering from MALS. I hope this helps. Let me know if you have other questions! 💜
Alyssa Layne thank you so much. My son is getting investigated for this after so much suffering.. he sleeps about 14hrs a day and the pain stops him from attending year 10 at school .
@@talktechmom5494 I am so sorry to hear that, but I am glad to know that his Drs. are investigating MALS. It is so uncommon that it often is not ever considered by many Drs. Has he ever been tested for/diagnosed with POTS? It could be compounding the fatigue; when I was first diagnosed with POTS, I was 14 years old and sleeping 18 hrs a day. It might be something to consider along with MALS. I pray that you get answers and relief soon, and tell him to take heart because life 2.0 (or even 3.0) after surgery is possible and it is wonderful!
well I was trying to find some information on multi-angle light scattering, but youtube led me here. IDK I just found you so pretty and wanna type something lol 💖
Awesome, thank you! Hope you learned something while you were here anyway! - Alyssa
@@AlyssaLayne wanna come and talk about the virus? inviting you to talk , we can do a skype or stuff make a video
I have a terrible burning gnawing sensation dead center in my solar plexus along with severe digestive distress. Could this be the cause?? Its the closest thing i can find
Hi Austin, I am not a doctor, but MALS could certainly be a possible diagnosis that you might want to bring up with your doctor and look into. I wish you the best and hope you are feeling better now! - 💜 Alyssa
Hi. I just had a cta with contrast to check arteries due to cyanosis in feet past 4 yrs undiagnosed and report says...severe narrowing celiac region median acruate ligament. Mals??
Are the symptoms for MALS similar to chronic pancreatitis?
Hello, did you have swelling under the breastbone? Rightside.
Light pain to the touch?
I did not have much in the way of swelling at all, but my abdomen was sensitive to touch directly on the midline underneath my breastbone. I hope that helps! - 💜 Alyssa
Hi! So I’m layla and I’m 15. Loved this video very helpful. So I have MALS anatomy and exact symptoms but compression isn’t visible on the Celiac artery but when I eat and do a duplex it gets compressed. I’m now thinking i might have the nerve type rather than the artery type or cause. What tests can they do? Or how do I make sure?
Hi Layla, I am sorry to hear you are having symptoms but struggling to get a diagnosis. I am not sure there is a consensus about how to diagnose the nerve type. My best guess is they would go for a nerve block and see if your symptoms improve with that. If so, you might be a good candidate for surgery to address those nerves. I hope you are doing better now! - 💜Alyssa
Do you feel this affecting your diaphragm or ability to take a deep breath?
I'm a Covid long hauler that still has difficulty breathing, but it feels like sometimes I can get the deep breath and other times it kind of sticks at the solar plexus point on the left side and something doesn't expand properly there which then in turn doesn't allow the left chest to expand fully and the left throat.
Diaphragm isn't obviously paralyzed, but it's the main cause of my difficulty breathing. I also get a kind of bubble swelling around that diaphragm area as the day wears on, but it feels muscular, so I suspect maybe something to do with either the ligaments or the muscles...
Hi Serena, I was never able to feel MALS in my diaphragm, and I think I would have as even before my first surgery I was studying oboe (a wind instrument) in college. This is not to say that what you are experiencing couldn't be MALS, but I did not experience anything like that myself. You might pose this question to one of the MALS Facebook groups and see if there is anyone there with a similar experience. I hope you get to breathing easier and feeling better soon! - 💜 Alyssa
@@AlyssaLayne I appreciate that, thanks Alyssa. Wishing you continued healing.
Hi I'm just wondering how are you since you made this video? Also when I had my ct scan they told me to hold my breath rather than breath out? Wonder could this be a problem diagnosing MALS
I am doing okay, life has been pretty crazy this year and I don't think it's going to let up anytime soon, but my health has been pretty stable the last several months. Hopefully, when things settle down, I will be able to make a proper update video. Thank you so much for asking! To answer your other question, it could be a problem and weaken the diagnostic power of the CT. I would wait and see what the radiologist report says, and if it's negative for MALS, you might talk to your provider about the breathing and see if they think it warrants a new test. I am sorry you are having to deal with people not being familiar with the conditions or the protocols for the diagnostic testing. I hope you will have answers and relief soon! 💜- Alyssa
i have one of MALs a 17 years old girl
how do they go about numbing the nerve during the final test?
They do the nerve block and inject an anesthetic agent into the celiac plexus. I can't find what kind they use for sure, but lidocaine sticks out in my brain for some reason. If you get to that point, I am sure the doctor who performs the procedure (in my case it was a pain specialist) can tell you exactly what they will use. -Hugs 💜 Alyssa
@@AlyssaLayne thanks.
@@jonathanlazaris3627 Thank you for watching !! 💜 Alyssa
I had surgery in November. I’m still having symptoms. Nausea, vomiting and pain. Does surgery work for everyone? Doctors said, wait 6 months to see if surgery worked. I just can’t take this anymore it’s already been a year living like this.
Hi Lety, I am so sorry to hear you are still having symptoms. I know that there is a range of responses that people have to surgery, and in my experience, it took me a while to be sure the surgery worked and to see a significant improvement in my health (around 6-8 months and then a year before I felt fully recovered). I also know many people (including myself) require more than 1 surgery. Keep your head up and keep bringing up your concerns with your doctor. Things can still get better. I know how frustrating it can be to have long-lasting health issues, but there is still hope that things will improve. I hope you find relief from your symptoms very soon! - 💜 Alyssa
@@AlyssaLayne how are you now? Any updates?
Fully Recovery time after open surgery mals?
It took me about 4 months to feel fully recovered from the surgery and the abdominal pain, though I continue to have some other lingering GI issues even now at 7 months post-op.
I felt fully recovered from the MALS pain and back to a good working baseline after about 4 months, though I do have some lingering GI problems now at 7 months post OP, it is also hard to know what those problems are caused by since my health is so complicated! Thank you for watching and asking the question!!
i was hospitalized for a week including 3 days in the critical care unit. it took me easily a year for fully open aorta to celiac artery and gastric artery bypass surgery as i had over 90% of the celiac trunk blocked by the ligament. finding a surgeon who knows how to do this surgery is almost impossible as this is a really rarely performed surgery. i had surgery done by the doctor who had performed the most surgeries in north america and was his 33rd case in an over 50 year career. i was told beforehand that the surgery killed a third of the people who made it to the operating room, but that without surgery, MALS was a terminal illness. unfortunately i had sufferred what was described as gruesome, bloody, and catastrophic damage during what the doctor described as his very worst case. the bottom line is that i have survived at least 13 years later and am grateful.
Hi ooo mmm, thank you so much for sharing your incredible story! I am happy you are still going strong despite having such a severe case. I know there are others in this community who are glad to hear of someone who is seeing long-term relief and for sharing that recovery experiences can vary greatly and depend on many different factors. Thank you again! - 💜 Alyssa
@@AlyssaLayne did the pain hurt?
Did you have pain in your right upper and back by your kidney and in the front the right side buy your rib cage in front of where your gallbladder would be and what really triggered your symptoms food wise very informative also are you born with this or can it be from a accident thank very much
Thank you so much for the questions! I did not have pain in my back or on the right side in the front. It just so happens that I also had my gallbladder out as well ( ruclips.net/video/GCyLDAFd7JY/видео.html ) and anecdotally, gallbladder issues seem pretty common in MALS patients. For me anything thicker than water would trigger pain for me, even the nutrient shakes I was using. The theory is that this is something one is born with, but it is not uncommon for it to be asymptomatic until some point in adulthood. There is definitely a need for more research on that front. Thank you so much for watching! 💜 - Alyssa
Hey thanks for the information I have been diagnosed with MALS in 2018 I have all symptoms like vomiting loss of appetite even if I drink water I just vomit I have pain in my upper abdominal but I am not losing weight so plz help me with this n I have pcod history I have operated in 2016 there was a 8cm cyst n now also m having pcod can u plz help me coz iam tired of being sick 😫 I want to become healthy plz help that will be grateful I am having MALS but not losing weight coz of pocd???
Hi Thesupersneha! As I mentioned, weight loss is not a requirement for MALS. I would suggest asking your doctor about MALS specifically and if they would please do the testing to rule it in or out. I find that asking for a test directly can help move the process along, especially if you think you have an atypical presentation. I am wishing you the best of luck on getting answers and feeling better soon! - 💜Alyssa
I am suffering from mals and Dr advice me for surgery.
Is it safe.
I have more pain in empty stomach. After eating food it reduce but remain.
My CT angiography report it's cnfm that i have Mals
Have u did your surgery
U explained it better than me , I gotta remake my video that’s why it’s private , I had my surgery last month , I’m having a few complications , I went with Dr Hsu ❤️ he’s very very well known and one of the best ❤️thank you for your informative video ❤️
Thank you for watching! I'm so sorry to hear you are having complications. I had my first surgery with Dr. Kane in 2017 and I had my second surgery in May of this year with Dr. Bilchik. I am planning on making more of a storytime video in the future that will cover my personal experiences in detail. Let me know when you redo your video, I would love to watch it! Much love 💜
Alyssa Layne sure 💕
Is it possible to have MALS without having any pain?
This is an excellent question! My understanding is that anyone can be walking around with the compression without knowing and that it in and of itself is quite common. Additionally, I don't know any stats, but it seems to me that most people present with pain, but I seem to recall in the MALS PALS Facebook group some people presented with just nausea. I think for a compression to be called MALS, there also has to be some sign of disruption to the system which is usually pain. In short, I think the answer is yes, but I'm not 100% sure. I hope that helps! Also, thanks for the comment 💜 - Alyssa
i cant tell if i could possibly have mals or if it really is just ibs, i have a lot of pain and bloating and nausea after eating right under my ribs in the center or my stomach and sometimes random pain on the right side of my chest, ive had a ct with contrast an endoscopy a capsule endoscopy and a colonoscopy and all are normal! my doctor didnt even mention mals at all and i fee like the freak who looks up rare illnesses on the internet if i bring it up, im only 17 and ive been sick since feb now i just wanna know if im crazy or not😭
Hi Neha! I understand how you feel! It can be hard to know if you are making a mountain out of a molehill or if there is something wrong. For me, my pain was so debilitating that I knew it had to be something, and my pain was clearly not IBS. Many doctors do not even know about MALS, so it could be good to bring it up with them if you think it might be a possibility. It may also be worth it to visit a doctor who knows about MALS already. There is a list of those doctors on the MALS PALS Facebook page. My best advice is know you are not alone and do your best to advocate for yourself because no one knows what is going on in your body better than you. Best of luck! - 💜 Alyssa
Are you able to feel a bump when you touch your abdomen for MALS?
When it was bad and I pushed just under my sternum, I could feel the huge palpitations in my fingertips and hear them with a stethoscope. I have a bump from my surgical scar there now. 💜 Does that answer your question?
@@AlyssaLayne yes I suppose so, however for me, I've always been able to actually feel a bump in my abdomen. I've gone through a lot in terms of checking for GI issues and everything has been clean. The only diagnosis rn is severe IBS-C, but I've always had a feeling it was something more. I'm a young adult male as well so idk what to think anymore but I'm gonna ask to get this checked. This has affected my life for a long time.
This is certainly something to look into. It isn't often on the initial differential for GI pain. And just because it wasn't a part of my experience does not mean it couldn't be a part of yours! I hope you get both answers and relief soon!!
@@AlyssaLayne if I may ask, how were your bowel movements when you had mals?
I don't mind at all! They were infrequent and slow, but I was not eating every day, and slow motility is common in EDS patients. I would have a BM every 3-4 days.
I have all the symptoms but nothing appears in the tests 🤔
I am so sorry to hear that you haven't been able to find answers in the tests. This is not my area of expertise, but I know some in the community believe that MALS is a nerve issue more than it is a compression issue and that no compression of the artery is needed for symptoms to occur. This makes testing for it difficult because two of the standard tests (the CTA and the doppler ultrasound) are testing primarily for the compression of the celiac artery and not the nerves. I don't really know more than that, but the MALS PALS Facebook group might be a good place to find others who've had experience with doctors who are willing to look for and at nerve-only MALS. Best of luck! - 💜 Alyssa
@@AlyssaLayne thank you very much
Has anyone had a hard heart beat with MALS?
I'm not 100% sure what you mean by a hard heat beat. I could often feel my heat beat in my abdomen (palpitations). I would also be able to tell that my heart was working hard, but this is also a symptom of some of my other conditions (like POTS), so it is difficult for me to tell if it was from MALS or something else. I hope this answers your question. Thanks for watching and for commenting! 💜 - Alyssa
I’m thinking it could be palpitations and some severe case of compression causing pots. Thank you tho. I have been having a lot of issues since my hernia is pressing on my ligaments. A lot of trouble with passing out. Palpitations. Weakness and I can feel the poor blood flow in my chest and racing of the heart like it’s over working. Very scary.
But yes. Feeling my heart beat in my chest.
I am so sorry you are experiencing that. I hope that you receive answers and relief soon! 💜 - Alyssa
yes! I just got diagnosed with MALS and one of my symptoms is my fast heartbeat. Hope you have a great day !
Were you scared of surgery?
I wasn't really. When I met my surgeon, he was very reassuring, and I had a lot of confidence in him and his ability to perform the surgery. I also knew that there wasn't much of an option to having surgery - there was no way I could go on living my life in the kind of pain that I was in. It also helped that I had my first surgery when I was a kid, and it went well. While there were some nerves day of, I knew that having surgery was going to improve my quality of life, and I was excited to finally feel better! Hugs 💜 Alyssa
My doctor ordered me a ultrasound for MALS diagnosis but I thought it was through CT scan ☹️ she doesn’t know much about it so I hope she didn’t order me the wrong test
HI Briee, They can both be tests for MALS, and most doctors prefer to start with the less invasive doppler ultrasound to evaluate your celiac artery for compression. If you are concerned, it never hurts to double-check the plan with your doctor to make sure you are both on the same page. I wish you luck on your journey to feeling better! - 💜 Alyssa
It should absolutely be CT with contrast that’s how I diagnosed with my multiple vascular compressions.. MALS in addition they may suggest a gastric empty study for the evaluation of gastroparesis I just finished my gastroparesis test few days ago. I know this was months ago but I do hope that you found some answers
They did my ultrasound & said they don’t see compression , but I have EVERY symptom. Could Doppler be wrong ? I wish they did a ct also ☹️ did yours come out positive once they did a ultrasound ? Or did u need further testing
Hi Briee, I'm so sorry to hear that you haven't found the answers you are looking for yet. My doppler indicated my MALS. It still required further testing, but that was only pursued after the positive indication from the doppler. There is a theory that the MALS symptoms could be only due to an involvement of the celiac ganglion (nerves) and not the artery, and the Doppler only tests for a compression of the artery. However, this is not a widely held belief, and it could be hard to get your doctor on board with this train of thought, but it might be something to look into. There are people with far more experience with neurogenic MALS on the MALS PALS Facebook group, and that might be a place to find more information on looking into this. I hope you find answers soon! - 💜 Alyssa